Matter of Mind: My ALS

[uplifting music] ♪ ♪ [water splashing] [soft music] ♪ ♪ - I started noticing a really subtle weakness and stiffness in my right hand.

♪ ♪ - I was trying to run and stay in shape, and I noticed that my times were getting slower but I was putting out the same amount of effort.

♪ ♪ - [through computer] I started having twitching in my shoulders, and it just never stopped.

♪ ♪ I had to make hard decisions about the future.

♪ ♪ - I didn't really know what ALS was.

But I knew that my life was about to change.

♪ ♪ All right, what I have set up here is an ALS obstacle course.

So these are all things that are really simple tasks for anyone.

But now with my ALS, some of them are really hard.

Some of them are impossible.

Nope, this is when I pass it off to a friend or my husband.

So I have to balance the coffee.

Oh, no!

[laughs] Hey, guys, I'm going to show you another part of my day, which is doing breathing exercises.

So I'll do a little demo for you here.

And just a warning, it's super sexy.

[light music] ♪ ♪ Here's my medication.

It's the first thing I do when I wake up and the last thing I do when I go to bed.

♪ ♪ Can you pick that up?

Yeah.

Go down.

Don't want me looking crazy.

- You're lucky I'm so skilled in many things.

- [laughs] I know.

Who knew?

You could add it to your résumé.

- And a little square pool that has-- - Hello!

[indistinct chatter] - What?

Oh, my gosh.

- Wow, three!

All right, keep going.

- It's the pressure, Shell, right?

The pressure.

- Whoa!

- Nice.

- Wow, pretty good there.

- Did you get a double?

- You got a double 17.

Look at that.

- Triple 17.

- All right, lefty, southpaw.

- My southpaw.

- Uh-huh, you're good.

- It's been a while.

[dart thwacks] - Hey.

- All right, all right, all right, all right.

- I'll do one more.

♪ ♪ - Oh!

[laughter] - I can't.

I can't get my fingers.

- All right.

Ready, Ritchie?

- What?

- You ready?

You want to go again?

- When I first got diagnosed, my symptoms were so minimal.

It took me a while before I really started to feel like I had ALS.

- Where's the other one?

Where'd you guys put it?

- At the other house.

- It's, like, an hour, right?

- Over.

[laughter, indistinct chatter] I continued on with my normal weightlifting, running.

I'm still working full-time.

I really try to just go about my normal life.

[water splashes] [indistinct chatter] ♪ ♪ - In the beginning of this, people would use the word "caregiver."

But I'm not a caregiver.

Like, I'm her husband, you know?

I'm doing what a husband would do.

What I do for my wife, I do it 'cause I love her, and no one can do this alone.

♪ ♪ [elevator bell dings] [indistinct chatter] - There's, like, four quadrants.

Like, this is, like, a learning thing, and... - I hope that we don't stigmatize the affordable piece by having them all in one spot.

- It's, like, 80 units, I think, that they've been trying to get in.

- I think the best approach would be to have it integrated, you know, with the market units as well.

- This project here... - As an architect, I'm interested in designing buildings for everyone, buildings that contribute something back to the community.

♪ ♪ - It has been 100 years in the making.

The Smithsonian National Museum of African American History and Culture is about to open its doors to the public.

- We want the building to reach out and to be welcoming to everyone.

- Phil Freelon is one of the architects.

He says the museum draws on West African influences.

♪ ♪ - Six months before the museum was to open, the diagnosis came down.

My right leg continued to get worse.

And then after a while, it was my left leg.

♪ ♪ And I didn't want anyone to know.

♪ ♪ [indistinct chatter] ♪ ♪ - Initially, it was a secret.

And I mean, like, a secret.

We didn't use the words "ALS."

We didn't use the word "Lou Gehrig's disease."

He just has an issue with his ankle.

♪ ♪ - Let's say the blessing.

- And she's like, yeah, hold on.

- Let us enjoy this food in this meal.

And let us just be fabulous like we know we can be.

Amen.

- All right, all right!

- Whoo!

- Wonderful.

Thank you.

- All right.

- What year was this?

- Oh, I don't know.

'90?

- New Mexico.

- Who is that?

- ♪ Close your eyes ♪ [jazz music playing] ♪ Let's pretend that we're both counting sheep ♪ - You had it together back then, didn't you?

- [laughs] - Still, I mean.

You had it together back then and now.

- You think?

- Yeah.

[indistinct chatter] ♪ ♪ - Have you got the water so you can see it skipping?

- Yeah.

- OK, ready?

- Uh-huh.

♪ ♪ - Whoa!

- See it skip?

- Dad did it.

Look at the ovals at the end.

♪ ♪ - I keep feeling like if I click my heels enough, it'll be like, oop, it was all a mistake.

This didn't really happen.

You're cool.

And he dreams about walking.

I dream about him walking.

♪ ♪ [upbeat music] ♪ ♪ - OK, extra battery.

CoughAssist.

♪ ♪ You all right, Charlie?

♪ ♪ - Yes.

♪ ♪ - Da-da-da-da-da-da.

Yes.

♪ ♪ Better?

- Locked and loaded.

♪ ♪ [indistinct chatter] Hey, Dale, do you remember telling our moms that we were going to spend the night at each other's house?

- We were gonna hang out with some girls.

I don't even know if you want to hear this story.

It was all Chuck's fault.

All the bad stuff we ever did was because of him.

- You're the bad influence, right, Charlie?

Yeah?

[light music] ♪ ♪ Hold your breath.

[air blowing] [machine beeping] ♪ ♪ That feel good?

♪ ♪ - My progression has finally reached a point that I can no longer speak, swallow, or move.

♪ ♪ - All right.

This?

There?

♪ ♪ - I communicate using only my eyes.

My computer uses little infrared cameras to track my eye movements.

♪ ♪ I used to do a lot of writing, but now it's hard on my eyes for long periods of time.

♪ ♪ - How's my driver doing?

- Doing great.

Thanks for asking.

- Yeah?

Where are we going?

- Going to the hospital to give you your infusion.

- Yeah.

Ready to get that special juice.

- [chuckles] - Hello!

- OK, so just in general, I mean, your last infusion was last... - Friday, yeah.

- Friday, yeah.

And it went well?

- Yeah.

- Uh-huh.

- [breathing deeply] - Good.

Good.

ALS is a neurological problem.

It's a disease of the nervous system.

It causes the degeneration of a very specific group of neurons called motor neurons.

Keep it up, nice and tall.

Good.

These are the neurons that control muscle movement.

♪ ♪ There's a great deal of research going on in ALS and many different approaches to therapy.

♪ ♪ One exciting area is neuroinflammation.

The idea is that if we could decrease inflammation in the brain that we might help our patients.

♪ ♪ - When I learned that I was able to participate in an experimental treatment, it was the best day of my life.

♪ ♪ There's nothing for ALS that makes you better.

For now, I just want to slow down the progression.

♪ ♪ - Getting some work done while they're taking blood work?

- Yeah.

- Typical, doing two things at once.

[laughter] ♪ ♪ It's very tough to tell whether it's slowing the progression 'cause we don't know where we would be if she wasn't taking it, so could it be working?

Yes, but we're trying to take it one day at a time.

♪ ♪ [door clicks open] - Ma?

Dad needs his cocktail of... red pills and blue pills.

- Ah, let me wash my hands.

We've been on grind for a cure...

Hoping and praying that we could find a way to halt the disease, slow the disease, something.

- There are a lot of trials and medicines, and if you change your diet in this way, there are these stories of people recovering.

And despite doing all of those things, there's been a steady transformation in his body and ability.

♪ ♪ [indistinct chatter] ♪ ♪ - Nnenna and I had been looking forward to growing old together, enjoying our grandchildren, retiring maybe, maybe not.

You know, architects are notorious for working and dying at the drafting table, so to speak.

♪ ♪ - You see an elderly couple holding hands, and the thought comes in your head...

I want that.

I want to be 80 years old, holding the hand of the person that I love.

♪ ♪ Hey, buddy.

- Hey.

- How you doing?

- I'm good.

♪ ♪ [dull thud] - Hey, Charlie.

Time to wake up.

[dishes clattering] All righty.

OK. You gonna burp?

Nope.

- Mmm, yummy!

- [laughs] - I, Angelina... - I, Angelina... - Take you, Charlie... - Take you, Charlie... - To be my husband... - To be my husband... - My partner in life.

- My partner in life.

- I will love you faithfully... - I will love you faithfully... - Through the best and the worst... - Through the best and the worst... - Through the difficult and the easy.

- Through the difficult and the easy.

- What may come, I will always be there.

- What will come, I will always be there.

♪ ♪ When Charlie and I met, I was completely attracted to him right off the bat because he was just sweet and caring and funny.

♪ ♪ Charlie and I both came out of relationships, being divorced, being separated.

We were starting again.

- So what plans do you have for the future for us Wrens-Kidwells?

- Hmm, first on my list is to get you guys raised.

- Right.

- So that's my main goal, get the children raised.

After that, then it's all about your mom and I.

- Really?

- Get a home, start our lives.

- So is there-- - Travel, vacationing.

♪ ♪ [indistinct chatter] Oh, my God, look what it is.

- It's a toaster, Daddy.

- Yay!

♪ ♪ It was kind of like we were back in our 20s, even though we were in our late 30s.

Then seven years into our marriage, Charlie was diagnosed.

♪ ♪ [machine beeping] Modify, 227.

- If you do it wrong, I will die.

No pressure.

- Oh, stop it!

Hold on.

[machine beeping] OK?

Are you good?

- At the time, when I could no longer breathe on my own, I still had two kids in high school and wanted to see them graduate.

I decided to get a tracheostomy to extend my life.

♪ ♪ Can you please suction my trach?

♪ ♪ [horn blaring] I constantly have to have my lungs suctioned.

You're always slowly drowning on your secretions.

♪ ♪ I currently have so much saliva that I have to use rags in my mouth to keep me from drooling.

♪ ♪ [announcer speaking indistinctly] ♪ ♪ [crowd cheering] ♪ ♪ Because I'm on life support, if and when the day comes that we no longer want to continue this journey, I have the option to pull the plug.

♪ ♪ They would medicate me, put me to sleep, and turn off my ventilator.

[whistle blows] [indistinct chatter] [cheerleaders chanting indistinctly] - Charlie and I have had the conversation about when the journey's gonna be over.

♪ ♪ I have to say, I'm a little selfish.

I don't want him to tell me it's time.

♪ ♪ - My first neurologist told me, "There's no way you have ALS.

It's an old white man's disease."

I felt like I was alone out in the world with the questions I had, and the anger and the fear.

- [speaking indistinctly] - Hey, guys.

It's so good to see you today.

I'm so glad that we've all found each other.

This is such an important... - I connected with other women all diagnosed under 35.

- Together, we have such a powerful message to... spread awareness, to build partnerships, to organize fundraising initiatives.

I feel like we have a few new faces.

[knocking] - Hello!

Hi!

- Hi!

- Alex!

Hi!

- You look beautiful.

- Oh, thank you.

It's so good to see you in person.

- I know.

- Hi!

- Hello, good to see you not at the hospital.

- How are you?

I know, no hospital!

- Nice to meet you too.

- Much better.

- Yeah.

- Alex, I like your wheels.

- Yeah?

[laughter] [indistinct chatter] - Tonight, Project ALS is honored to welcome Her ALS Story, a collective of 20 young women who advocate change, legislative awareness, and research.

[cheers and applause] - I was diagnosed with ALS at 26.

- 32.

- 28.

- We had to accept the fact that the lives we'd been dreaming of were going to be ripped away.

So we had to figure out what to do with the time we have left.

♪ ♪ - We have hope that new treatments and legislation are on the way and that our stories will help to accelerate that momentum.

[cheers and applause] ♪ ♪ - My hope for ALS is, it goes from being a fatal disease to a chronic disease that you can live with.

The reality is, we don't know enough about ALS.

It's been around for over 200 years, but yet your best guess is really how to treat yourself at this point.

- Michele Stellato is pushing to pass Act ALS.

It would increase funding for research.

- Michele, thank you for sharing your story and for your advocacy.

That's what's making the difference.

That's why there's now an ALS caucus here in the Senate and why we're working hard on a bipartisan basis to move these two bills forward.

- I'm keeping a positive outlook because I feel like we can really change the outcome of this disease.

- 1, 2, 3.

- OK, all right.

- 1, 2, 3.

- That's it.

- That was good?

- That's good.

- You're good?

- As the disease progresses, everyday things are a struggle.

Six months ago, I would go into the office occasionally.

Now if I have business to conduct, I'll do it over the phone.

- How about that?

- That's good.

I've had to have a hospital bed brought in, which meant that for the first time in 40 years, my wife and I have not been able to sleep in the same bed.

That was a huge change for us.

♪ ♪ [exhales heavily] - Keep going.

Keep going.

♪ ♪ - Yeah, you did get tight, didn't you?

♪ ♪ - Tell me how things have been going since last time I saw you.

- It's been a little more difficult breathing, talking.

- Unfortunately, it does look like the progression of your disease in the past few months has been a little faster than it was.

One of the things I'm most concerned about in the next few months is your nutrition.

It will become more challenging.

And so sometimes people with ALS opt to have a feeding tube.

Have you seen somebody with one of those?

- I'm not interested in that.

- OK. - So... - Well, you know, I just want to make sure you are aware of all your options and know the pros and cons.

- I appreciate it.

- And I'm gonna do what you want to do.

There's no right or wrong answer to these things.

- Let me ask this, Dr. Bedlack.

- Mm-hmm.

- For people who may be like me who don't want a feeding tube or a respirator, what are my options for transition?

- For some people who decide they really don't want to be aggressive, there comes a point where they ask me, you know, "What are my options for getting out of this?

Like, I've had enough."

- Right, yes.

- And in North Carolina, we don't have any of these sort of right-to-die options where I can give you something to take that ends the disease, like they do in some states.

But there are very acceptable and legal ways to accelerate the end of ALS.

The one I've seen used the most is just stopping eating and drinking.

I've probably had one or two patients a year for my entire career do that.

♪ ♪ - OK. - One of the things that those patients who do that tell me-- the families tell me was really nice was that they-- they had sort of a constricted time frame to say their goodbyes.

♪ ♪ - Well I like the idea of controlling it.

♪ ♪ - Can you please suction my trach?

- OK. [machine whirring] - Can you please clean my eyes?

- Yeah.

- I'm hungry.

- OK. Charlie, can I keep this so I could whip you?

Get up!

Get up!

[laughs] Go to work!

[laughs] Yeah.

Charlie was a heavy-duty mechanic by trade.

When he got diagnosed, he had to leave his job.

- Then she was nominated for the Oscar the next year.

She won the Golden Globe.

- I love you.

- I love you too.

- And we always google, like, OK, the best Super Bowl performances of all time... - Do me a favor and don't laze around so much.

- Prince is my favorite.

It's always listed at the top.

- Uh-huh.

- [smooches] He ended up getting on disability.

And it was starting to strain us financially.

There was no way that we could afford a caregiver to come in to watch him while I was at work.

So I had to leave work five years ago now.

- I'm here to switch out the Hoyer lift for you.

- Yeah.

- So what's the issue?

- I couldn't--and I brought it up like this.

I couldn't get this from being on that side, you know, to let him off.

So that's--that's-- this is-- - Yeah, that needs to be replaced already, yeah.

- Some say that ALS is a rich man's disease.

There are so many things that you have to purchase even with some type of insurance.

- This what--yeah, see, that's what-- yeah, totally different.

- We maxed out our credit cards, emptied our savings accounts, and had my wife's car repossessed.

- I'll go ahead and update it for you, OK?

- OK, that's fine.

- If it wasn't for our friends gifting us a few key items, I don't know what we would have done.

♪ ♪ - There you go.

♪ ♪ I'm within about three rooms' distance of Charlie all the time.

♪ ♪ Within those three rooms is our lives.

- Can you please swing my computer away from me?

- There?

♪ ♪ - Thank you.

- You're welcome.

We ready for bed now?

Yeah?

Because I'm tired.

Yeah?

- I love you so much, babe.

♪ ♪ - I don't resent my husband.

I resent the disease.

♪ ♪ But I want my old life back.

♪ ♪ I want Charlie back.

♪ ♪ - Hello.

- Hi.

- Hey, baby.

- Morning.

- Hey.

- How you doing?

Sit down.

Now you could just boss me around.

Michele went away with her girlfriends down to Atlantic City.

I was nervous about it.

Oh, don't have to throw that one.

I'm right here.

Thank you.

Unfortunately, she did take a spill, and it was a pretty good one.

♪ ♪ ♪ ♪ [speaking indistinctly] ♪ ♪ [exhales heavily] - Where would you like this, put behind you?

- Yeah, off to the side somewhere.

And I can grab it.

That's fine.

I'll just put him right... - Hello, Charlie.

- Hello.

How are you doing?

- If you don't mind, I haven't fed Charlie this afternoon.

If it's OK-- - Go ahead, babe.

- OK, thank you.

[sighs] - When we first found out, you inspired me.

I'm just gonna let you know that.

I'm like, she could do it, I could do it.

There it is.

- That's right.

- [laughs] - It's true.

Tell me about your little incident yesterday that you had.

- Chicken fettuccine, it went down in my lungs.

I woke up choking.

It was terrible.

- OK, you guys don't want to hear this.

How comfortable are you guys with the feeding tube?

- I don't want her in your position.

- Why?

- Because-- - She's that special.

[laughs] What are you, queen, obviously.

Listen, listen to him.

- I don't want-- it's hard.

- I put way too much on Angelina.

- I feel the same way.

Paulette gets irritated really easy.

- Yeah, I'm a grumpy turd in the middle of the night when you wake me up.

- Yeah!

- 'Cause I'm like, really, you have to wake me up now?

- I do that.

I get mad.

I get mad with Charlie too.

- There's a devil in Angelina.

- There's also an angel too, so best back off.

[laughter] OK. - Getting the tube kind of sucks, but afterwards-- - Do you want to be Pete, or do you want me to be Pete?

- I'll be Pete.

- OK, you be Pete.

So you're going to roll this way, hold him... - Mm-hmm.

- Put this all the way underneath him... - OK. - And then roll him back.

- How in the hell is he supposed to poo like this?

- You would take him over.

Or what I have seen other people do, just so you know, is that they will take a bucket and bring the bucket to them, right, and-- and--or bring a bag.

- [coughing] - Yeah, exactly.

- I can't do it!

I can't do it!

- You can do it.

You can do it.

- No, I cried, remember?

- You can do it.

- I'm not gonna be able to do this at all.

- You will, because you know what?

You'll find it in you.

♪ ♪ ♪ ♪ - Oh, thank you!

It says, "Pop Pop."

And there's a drawing.

- I made that.

- It's beautiful.

We decided that we weren't interested in chasing down the next possible treatment that really isn't leading to anywhere, as far as we could see.

And the quality of life would be less than what I would hope for with invasive procedures like a feeding tube or a respirator.

- 1, 2, 3.

[grunting] ♪ ♪ - When people ask when-- when we're gonna stop this, whenever you want to stop is when we're gonna stop.

And that's when you say you can't communicate anymore.

But I don't want to think about any of that until it gets there.

I've lost you every step of the way, but you're still here with me.

♪ ♪ - It is getting harder and harder.

I thought that I would have gotten sick by now and would have passed.

♪ ♪ - Hey, good morning, you guys.

How are you?

- Hey, how are you?

- We don't know when or if we will have to pull the plug, but the day is coming.

- Yeah, but don't-- we don't quit.

That's our motto.

We start something, we finish it.

♪ ♪ - I love you so much.

I'll always keep loving you.

♪ ♪ We will always be together in heaven.

♪ ♪ - Right now, he's off all medications.

As his family, as his children, we support him in that.

He's interested in living the best life he can, a life with dignity.

♪ ♪ - I've been looking for some agency in this.

♪ ♪ From a spiritual standpoint, I feel like I'm ready.

♪ ♪ So Sunday, I stopped eating and drinking.

I have lived a full life.

I have accomplished a lot.

My children are grown.

I've met seven grandchildren, there may be more.

But seven of them, I've met and I've seen recently.

So I'm trying to-- I'm a person that likes control, Dr. Bedlack.

This thing has been out of control for years.

And I want-- I want these last few weeks, I want some level of authority over that.

I'm looking at a tsunami heading toward the shore.

So I want to face the tsunami head-on.

Come on, let's bring it.

There's something better on the other side.

I'm not afraid to die.

I'm looking forward to those moments that we all hear about.

- Well, listen, if there's anything that you need, you know, over this next week or so, please don't hesitate to reach out to me.

- Well, one thing you could do to help us is not to forget me.

♪ ♪ - It has flowers and fruits on it.

- And what are we gonna-- what are we gonna do with it?

- And we're gonna fill it up with river water, put it on Pop Pop's altar.

♪ ♪ - You got to tell Pop Pop why everything is in here.

♪ ♪ We put in stones for the grandkids.

♪ ♪ Sand will be because when your body goes away, it turns to earth.

♪ ♪ And water.

♪ ♪ We pray that Pop Pop has a smooth transition.

♪ ♪ - ♪ Take me to the water ♪ ♪ Take me to the water ♪ ♪ Take me to the water ♪ ♪ To be baptized ♪ ♪ None but the righteous ♪ ♪ None but the righteous ♪ ♪ None but the righteous ♪ ♪ Shall see ♪ ♪ God ♪ ♪ ♪ [no audible dialogue] ♪ ♪ [indistinct chatter] - Give it a spin, girl.

- Whoo!

Go, go!

♪ ♪ ♪ ♪ - Oh, yeah.

♪ ♪ [indistinct chatter] - We're gonna open up with an African tradition.

I'm gonna pour some water into this plant and recite a few words.

[speaking an African language, crowd responding] - Phil Freelon lived an incredible life with intention and purpose.

♪ ♪ I have learned so much from him not about death but about living.

♪ ♪ [ducks quacking] - Get this in.

All right.

♪ ♪ We can never foresee what the future's gonna bring.

But as long as I can muscle what's going on... Get him.

Get him.

And as long as he can smile, Charlie and I both said we can continue this.

♪ ♪ - Hi, Mom.

- Hi, mijo.

- Hello.

- Hello.

- How are you doing?

- I'm doing good.

♪ ♪ - I try to look for something positive in each day... ♪ ♪ Even if some days, I have to look a little harder.

♪ ♪ I try to live each day as if my life has just begun.

♪ ♪ ♪ ♪ [uplifting music] ♪ ♪